The Specialised Healthcare Alliance has campaigned for the review of these policies for several years and, while welcoming the belated consultation, is concerned at the proposed approach. This risks seeing impractically high barriers established for individual patient funding applications, and omits consideration of clinically critically urgent cases.

Overall, the Alliance is concerned at the consultation proposals. In particular, the provisions for highly specialised technologies fall significantly short of what is required and risk jeopardising access to innovation for very small patient populations in future.

The Specialised Healthcare Alliance has joined other patient representative organisations in signing a letter to the editor of The Times newspaper calling for NHS England to communicate its prioritisation decisions respectfully to all.

The letter is as follows.

“Sir, Over recent weeks, we have been alarmed by the “divide and rule” tactics used by NHS England when communicating which new treatments it will make available to patients.

These funding decisions affect the lives of people with a range of rare or complex conditions. As organisations representing the patients who would benefit from these treatments, we are concerned by NHS England pitting the interests of one patient group against another in its press statements. All patients and all conditions matter.

In the light of this week’s High Court hearing about the HIV prevention drug, PrEP, NHS England will soon look again at which treatments it will fund.

We understand the NHS must make difficult choices. All we ask from our national health service is to adopt an ethical and transparent approach in taking these decisions and to communicate them in a way that is respectful to the people who are affected by them.

The SHCA today welcomes the publication of the House of Commons Public Accounts Committee’s report on NHS Specialised Services, following a recent evidence session and National Audit Office report on the issue.

To a significant extent, the report reflects the views of the Alliance and its members, as expressed through submissions to the inquiry. The Committee sets out areas of significant concern, including NHS England’s lack of transparency and accountability, poor data and business intelligence, and need for stronger financial control.

The Committee’s recommendations include:

1. As a matter of urgency, NHS England should ensure that a consistent process is put in place to ensure its decision-making is transparent and equitable. It must improve the transparency of its decision-making by publishing a document, by September 2016, which sets out the roles of its advisory committees and decision-making bodies, the decisions they make, how these decisions will be documented, and when and to whom they will be made available.
2. NHS England should engage with clinical commissioning groups to address barriers to collaborative commissioning and, by October 2016, set clear milestones and timelines by which measurable service change and patient benefit from this initiative will be demonstrated.
3. NHS England has said it will be collecting more consistent data. By April 2017, it should use this data to link spend, by service provided, to service quality, patient outcomes and patient experience; to allow clear comparison between different providers and to improve value for money.

While some of the Committee’s concerns on the large increases in budget for specialised commissioning since April 2013 can be explained by the incorrect baseline budget set at the time of NHS England’s establishment, a range of concerns are set out in relation to future cost growth and management of provider activity.

The Alliance will press for NHS England to deliver on the Committee’s recommendations in the months ahead and looks forward to ensuring that patients’ interests are at the front and centre of this work. The Alliance considers that the interrelated recommendations of the Specialised Services Commission published in May provide a practical template for NHS England.

An expert commission on specialised services, drawn from across the health service and chaired by Lord Warner, has called for major changes to improve outcomes and efficiency but warned that these alone are unlikely to avoid hard choices about what the NHS can afford without improved funding.

Specialised services costing £15 billion a year encompass everything from severe burns and spinal injury to treatments for cancer and a growing number of rare diseases. As such they are fundamental to a comprehensive health service and essential to keeping British clinical practice in the vanguard of global medicines.

In the wake of a recent NAO report, the commission strongly supports the need for national funding and accountability for these strategic services and sees the associated mandatory national standards as a key means of liberating more local approaches to management and delivery.

In particular, the commission recommends greater freedom for commissioners to work with networks of providers to deliver end to end services for patients’ entire care, enabling them to minimise use of expensive and overstretched hospital resources. New models of remuneration should reflect payment by outcomes for the patient rather than hospital-based activity, underpinned by sound data.

The commission considers that specialised services should play their part in maximising the value of every pound spent by the NHS but doubts that efficiency improvements will be enough to avoid pushing the NHS towards unwanted rationing of services, treatments or both.

Lord Warner comments: “The NHS is a complex eco-system running from general practice through to world-leading centres of expertise and excellence. The commission favours more efficient joint-working through networks, making patients rather than hospitals the hub of care. The current danger is that chronic deficits will progressively impede the range and quality of what the NHS can afford to do. This would have ramifications for patients and this important part of the UK economy alike.”

Notes:

1. Lord Warner served as a Health Minister in the Blair government from 2003 to 2007 and advised the Coalition Government from 2010 to 2015 in various capacities. He now sits as a non-affiliated peer.
2. The Specialised Services Commission was convened by Lord Warner on the 10th anniversary of the publication of the Carter Review of Specialised Commissioning. The full membership was:

3. The Commission conducted its work between December 2015 to April 2016 and was assisted by written evidence from a variety of patient organisations, Royal Colleges, industry bodies and companies.
4. The Commission’s recommendations are attached as an Appendix.
5. The National Audit Office published its report into NHS England’s delivery of specialised services commissioning on 27th April 2016. The report can be found here.
6. The Commission has been serviced by the Specialised Healthcare Alliance’s secretariat. JMC Partners currently provides the secretariat to the Specialised Healthcare Alliance.
7. For further information on the Commission’s report, please contact Mark Loughridge (mark.loughridge@shca.info).

The Specialised Healthcare Alliance has responded to NHS England’s consultation on developing a method to assist investment decisions in specialised commissioning.

The Alliance broadly considers that the proposed method provides a reasonable basis for relative prioritisation for patients requiring specialised services, but has serious reservations about the applicability of the proposed methods to highly specialised services.

The Alliance also notes the need for NHS England to commit to publishing both its prioritisation decisions and the rationale for those decisions.

Over the last few months, the Alliance and its members have engaged with the NAO to provide evidence on how NHS England has implemented its specialised commissioning responsibilities to date.

The NAO’s main findings are that:

1. While national commissioning has strengthened NHS England’s position to influence providers, it is not clear that commissioning hubs have the skills to manage contracts effectively
2. The scale of specialised commissioning was underestimated by NHS England and financial problems have persisted, caused by a combination of incorrect baseline budgets, poor contracting and new medicines costs
3. There are concerns on the governance established for specialised commissioning, including the delineation of oversight groups and operational control, as well as criticism of NHS England’s failure to be more transparent
4. NHS England does not have the information it needs to drive service improvements in specialised services, nor does it have the data to assess whether patient outcomes or inequalities are changing
5. “Until NHS England significantly improves its strategic and operational arrangements for the commissioning of specialised services [the NAO] cannot conclude that the current commissioning arrangements are providing value for money.”

The Alliance now calls on NHS England to act rapidly on the areas the NAO has highlighted for improvement, including the clarity and transparency of its decision-making procedures, the competency of its contracting, and its use of data and information to improve patient outcomes.

The Specialised Healthcare Alliance has responded to NHS England’s consultation on the future of its Clinical Reference Groups (CRGs).

CRGs provide service-specific advice to NHS England on its commissioning of specialised care and have been a core part of national commissioning since its establishment in April 2013.

NHS England is proposing to reduce the number of CRGs, while also providing them the secretarial support which has been a notable absence to date. While welcoming the further resource being made available for CRGs in future, the Alliance is calling for far greater detail to be made available on how CRG sub-groups will operate to ensure that CRGs retain the ability to provide expert clinical advice on service proposals.

With a tight post-consultation timeline envisaged by NHS England before the new groups are constituted and populated, the Alliance looks forward to seeing NHS England’s response to the consultation, which will need to demonstrate its responsiveness to feedback.

The UK Rare Disease Forum has published its first report on the implementation of the UK Strategy for Rare Diseases.

The Forum was established by the Department of Health as an independent body overseeing progress in introducing the 51 commitments of the UK Strategy, published in late 2013.

The report is the first of several which the Forum will provide to Ministers every two years. It covers progress across the commitments in each of the four devolved health services.

The Alliance has been a member of the Forum since its establishment and is also in membership of the Scottish Rare Disease Implementation Oversight Group. This report is a welcome development in highlighting the progress made to date and the challenges which remain for people with rare and complex diseases.

While respecting the autonomy of the Forum, the Alliance would hope that future reports will be hosted on the departmental websites of all four health administrations, as well as on those of Forum members, to demonstrate the support of statutory partners for its provisions.